Post by sct2012 on Jun 19, 2012 5:41:20 GMT -6
Hi, I am 6 days post ependymoma removal from the L5-S1 level.. 3 years ago had an episode of severe muscle spasms in my sacral and lumbar region. I went to the ER and they gave me pain meds and muscle relaxers. These episodes happened 3 to 4 more more times over the next 2 and 1/2 years. One doctor told me I was working too hard and to sit down more on the job. That did no good.
As of Septmeber the pain became constant. On the 1 to 10 pain scale, during the day while standing the pain was always 4 to 5 but the main issue was when trying to lie down, pain would increase to 9 to 10, especially in prone position. An urgent care doc ordered an open MRI without contrast. The report came back as only mild disc dessication at l5-s1. He referred me to a pain mgmt doc who treated me with epidural steroid injections over the next few months which gave me relief bit no more than 2 weeks at a time. I suffered through the pain and scheduled a visit with a spine surgeon. He looked at the same Mri images and reports and decided to do a discogram. It came back negative and told me I would just have to live with the pain. He, like the other doctors completely missed the tumor.
At this point I was very depressed and exhausted. I slept about 1 hour at a time with pain meds before having to wake up and walk off the pain. Somehow I only missed a handful of days of work
My wife had a friend from her days working at MD Anderson in Houston and he told us to mail him the MRis. He and his colleagues immediately noticed a mass at L5-S1 level and I was set up with an excellent neurosurgeon a few days later who recognized the urgency of the situation and had me scheduled for removal of the tumor. He was expecting a Schwannoma but it turned out to be and ependymoma. It was grade 1 and they said low change of recurring so no radiation or chemo necessary. The tumor was somewhat intertwined with my bowel and bladder nerves so hopefully these will return to normal. I am only able to void about 150 ccs no matter how full my bladder is and I have a hard time with my bowels. Rectal area is numb and I lost control my bowels in the shower today which my wife had to clean up since I cannot bend down.
Although I am happy the presurgical pain is resolved, the bowel and bladder issues may be the new norm for me, although I am hoping with time they will return to normal. Also, I have had a few panic attacks since the surgery. I have always been a very independent person and what may be the new normal is just scary to me.
Thanks for listening.
As of Septmeber the pain became constant. On the 1 to 10 pain scale, during the day while standing the pain was always 4 to 5 but the main issue was when trying to lie down, pain would increase to 9 to 10, especially in prone position. An urgent care doc ordered an open MRI without contrast. The report came back as only mild disc dessication at l5-s1. He referred me to a pain mgmt doc who treated me with epidural steroid injections over the next few months which gave me relief bit no more than 2 weeks at a time. I suffered through the pain and scheduled a visit with a spine surgeon. He looked at the same Mri images and reports and decided to do a discogram. It came back negative and told me I would just have to live with the pain. He, like the other doctors completely missed the tumor.
At this point I was very depressed and exhausted. I slept about 1 hour at a time with pain meds before having to wake up and walk off the pain. Somehow I only missed a handful of days of work
My wife had a friend from her days working at MD Anderson in Houston and he told us to mail him the MRis. He and his colleagues immediately noticed a mass at L5-S1 level and I was set up with an excellent neurosurgeon a few days later who recognized the urgency of the situation and had me scheduled for removal of the tumor. He was expecting a Schwannoma but it turned out to be and ependymoma. It was grade 1 and they said low change of recurring so no radiation or chemo necessary. The tumor was somewhat intertwined with my bowel and bladder nerves so hopefully these will return to normal. I am only able to void about 150 ccs no matter how full my bladder is and I have a hard time with my bowels. Rectal area is numb and I lost control my bowels in the shower today which my wife had to clean up since I cannot bend down.
Although I am happy the presurgical pain is resolved, the bowel and bladder issues may be the new norm for me, although I am hoping with time they will return to normal. Also, I have had a few panic attacks since the surgery. I have always been a very independent person and what may be the new normal is just scary to me.
Thanks for listening.